My Relationship with Disability

Under the term “handicap”, many of us will imagine a physical limitation or a mental illness. We perceive handicapped people as individuals who may, due to their limitation, encounter complications while doing certain activities. A “healthy” person rarely even thinks of these complications because they do such activities routinely, without problems. These complications should be got rid of or mitigated by measures such as universal design. For many, a handicap means a certain form of bodily or psychological obstacle.

Disability as a phenomenon that makes certain actions impossible can be understood on two levels. We can distinguish between the medical and the social model of disability.

This aspect serves to open a discussion about the topic of disability, especially its social dimension. People living with disability are often presented exclusively through their disability and its medical attributes. However, it is important to see disability in its social dimension that opens up a new perspective. The realization that disability itself is not a problem helps. The real problem is a lack of modifications and measures enabling people with disability to lead daily life, have social contacts etc. — the fact how society approaches disability.

“Based on several stories of people living with various forms of disability, this aspect describes situations that challenge the common view on disability. It primarily focuses on how young people with disabilities communicate or would like to communicate their health in relationships they start or develop. To our discussions with young people, we decided to bring up true stories of real people that due to their health condition could not or did not want to start relationships, had to negotiate power or help, or — with consideration to their health — needed to express their specific problems.”

Facilitator Team, NESEHNUTÍ

  1. Mezinárodní klasifikace funkčních schopností, disability a zdraví: MKF 32 ↩︎

  2. Mezinárodní klasifikace funkčních schopností, disability a zdraví: MKF 32 ↩︎

  3. Mezinárodní klasifikace funkčních schopností, disability a zdraví: MKF 9-10 ↩︎

“We, same as the Czech translation of The International Classification of Functioning, Disability and Health (ICF), incline to the term “disability” instead of “handicap”. We believe that this term better reflects the experience of people with physical or mental form of disability. We consider the word “handicap” to be stigmatizing because it represents a certain omnipresent characteristic that is often perceived as a basic attribute of its bearer. For people around them, handicapped people are bearers of a handicap in each context and situation.”

Facilitator Team, NESEHNUTÍ

Why did we decide to bring up this issue?

The issue of interpersonal relationships of people with physical or mental form of disability is greatly influenced by stigmatizing societal attitudes. To a large extent, these can be shaped by media presentation of disabled people, for example. They are often presented as abnormal individuals existing outside our daily lives 1, and at the same time, the media do not provide them with sufficient room for sharing their life experiences and needs.

Stigmatizing media presentation, the invisibility of people with disability, and the failure to provide the opportunities for sharing their personal experiences can intensify an impression that these people are “strangers in our world” and cause the adoption of stigmatizing and negative attitudes of the public. This corresponds to the finding that the prejudice against people with mental illnesses predominates in the Czech society more than among Czech doctors. However, the observed level of prejudice in both groups was high. For instance, 37 % of the general population said they would not want to have a neighbour with a mental illness. 2

For this reason, as well, this guide presents the theme of interpersonal relationships of people with physical or mental illnesses in the form of personal stories narrated by them. Consequently, workshop participants have a chance to get first-hand experience. This way, they can learn about how people with disabilities share their problems and needs with others and in what ways these problems and needs are specific or, on the contrary, similar to theirs. 

The lack of first-hand experience of people living with disabilities often leads us to create our notions — albeit unfortunately incorrect — about the life with a disability. For example, in the case of experience of a visually impaired individual, we put it on par with our life shrouded in darkness. 3 In the case of life of people with hearing impairment, we imagine our life in silence. 4 Due to this, it is difficult for us to understand how people with disabilities are able to perform daily tasks. Furthermore, from time to time, we may tend to think they are not able to do them at all. 5 It may happen we will assume that people with disabilities are not able to perform certain tasks or start relationships, and we exclude them in advance from these.

If we abandon the notions in which people with disabilities are just subjects of medicine, we can understand more easily how complex the lives of disabled people really are. We see the potential in this chance to get-to-know personal experiences of people with disabilities concerning their interpersonal relationships: there is both the potential for a better understanding of these relationships and for improving our relationship to disabilities and with people who live with them.

  1. Shakespeare, Tom. “Re-Presenting Disabled People.” Disability, Handicap & Society, no. 8.1, 2007, pp. 95–101. ↩︎

  2. Winkler, Petr, and et al. “Attitudes towards the People with Mental Illness: Comparison between Czech Medical Doctors and General Population.” Social Psychiatry and Psychiatric Epidemiology, no. 51.9, 2016, pp. 1265–73. ↩︎

  3. Porkertová, Hana. “Nevidomá Zkušenost: Disabilita Jako Asambláž a Vztah Mezi Diskurzem, Tělem a Zkušeností.” Disertační Práce, 2017. ↩︎

  4. Lane, Harlan. Pod Maskou Benevolence: Zneschopňování Neslyšící Komunity. Lingvistika, Karolinum, 2013. ↩︎

  5. Porkertová, Hana. “Nevidomá Zkušenost: Disabilita Jako Asambláž a Vztah Mezi Diskurzem, Tělem a Zkušeností.” Disertační Práce, 2017. ↩︎

A study by Nawková et al. demonstrates that 37 % of articles published in the 6 most read Czech newspapers described people with mental illnesses negatively. A quarter of the articles presented people with mental illnesses as aggressive and dangerous. Moreover, only 10 % of Central-European articles contained direct quotes of people with mental illnesses or quotes of their family members. 1

  1. Nawková, Lucie et al. “The Picture of Mental Health/Illness in the Printed Media in Three Central European Countries.” Journal of Health Communication, no17.1, 2012, pp. 22-40. ↩︎

How to Use This Guide?

The presented guide’s main strength is that it draws on real accounts of young people with physical or mental form of disability. The stories presented here provide the reader with an insight into real experiences, issues, and challenges that people with disabilities encounter in relationships. This is a unique qualitative exploration into the life of young people whose voice is not sufficiently reflected in the public debate and whose experiences are often overshadowed.

When working with the stories and the guide, it is important to point this fact to your participants. Knowing that the presented stories are real brings participants closer to personal experiences and needs of young people with disabilities regarding the relationships they build. This way, we can support the participants in understanding the dynamics, social factors, and societal barriers to these relationships which place people with disabilities to a disadvantageous position. We can support them in understanding disability not as a medical issue but as a phenomenon that comes to the fore only under certain social conditions.

Simultaneously, the presented stories are constructed in such a way to disrupt deep-rooted stereotypes and expectations regarding people with disabilities and enable us to think about it differently — in the way based on the social model of disability. Thus, this guide aims to invite participants to reflect on their prejudices and expectations which we have about people with disabilities.

For these reasons, the guide presupposes the creation of a safe space in which the participants will have not only a chance to tune in to the topic but also a chance to reflect on deep-rooted stereotypes in a safe space. You will find more info about a safe space in sections Challenges and Preparing for Facilitation.

You can use this guide both for working with people who live with disabilities and for young people without this experience. In both cases, raising this issue and broadening one’s horizons can be rewarding. At developmental stages of this guide, however, our primary aim was not to create activities accessible to people with special educational needs.

This aspect can be used both in the school context and in non-formal youth groups.


Usage of Inclusive Language by the Participants During the Activities

Before carrying out a workshop, the facilitator should familiarize themselves with the basic terms of inclusive language that afford talking (and thinking) about the topic. The facilitator should also explain to participants the importance of using inclusive language during the workshop. Apart from the rejection of vulgar terms for people with physical or mental disabilities, it is also important to be aware of some oft-used words that stigmatize the position of these people in society. These ways of mislabelling people with disabilities usually fuel stereotypical perceptions — that the personality and any behaviour of these people is necessarily dissimilar (to “ours”) and this fact is necessarily connected to their disability.

A New Perspective and a Search for the Right Answers

This guide does not aim for an empathetic understanding/experiencing of a disabled person’s situation or a depiction of this experience as an inspiration. On the contrary, the stories disrupt the routine ways of thinking about this topic and add new perspectives and social context. It is necessary to explain to the participants that the activities’ aim is not to search for the right answers but to try to understand the experience of people with disabilities from a new perspective.

Creating a Safe Space for the Workshop Participants

Considering this topic, it can be challenging to create a suitable safe space. It should support participants on two levels — on the level of reflection on deep-rooted stereotypes about people with disabilities and on the level of basic communication principles that are essential when bringing up sensitive issues.

Providing new angles that disrupt existing views can be, in the first phase, met with resistance and efforts to affirm one’s existing perspective. If we encounter this attitude during the workshop, it is not suitable to try to persuade the person in question of the rightness of one or another view. On the contrary, to digest a new experience, it is important that these reactions, too, are accepted and not questioned. Even such reactions and experiences belong to the discussion. Rather than making the effort to persuade someone, it is far more effective to try to find out why the person in question reacts this way and what are the causes of this reaction. Reflection and reconsideration of existing views can be a long-term process. For many, the act of bringing up such an issue can be a first step that initially provokes a negative reaction but at the same time can create a seedbed for new attitudes and an understanding of context.

For the workshop to function well, you must point out to the participants that they maintain mutual respect for opinions and experiences of others. Since the participants may have personal experience with some topics that they are not ready to share yet, no one should be forced to participate in the discussion. For any activity, it is key to create such an environment in which the participants can listen to the stories and ask questions, respect each other’s boundaries and reflect on their actions, experiences, and language they use.

Instead of using phrases such as “confined to a wheelchair” or “wheelchair-bound”, it is more appropriate to use alternative expressions such as “wheelchair user/using” or “uses a wheelchair”. The former phrases are negative and emphasize limitations/restrictions, while the latter are positive and indicate liberation — the wheelchair is a mobility aid that enables its users to perform daily tasks.

Instead of “deaf and dumb” and “deaf-mute”, use more appropriate terms such as “person with a hearing impairment”, “speech impaired”, “user of sign-language”, or simply “(a) deaf (person)”. Deaf and dumb suggests that being deaf impairs mental capabilities as well. This is incorrect. Deaf-mute implies inability to use one’s voice and, more broadly, to express yourself — both of which are not true.

Mental illnesses and numerous psychological problems are often invisiblized or downplayed using the wrong language. It is key to avoid the duality of a mentally ill/normal person. Instead of the word “normal” in the topic of mental illnesses, we use the word “neurotypical” and “neuroatypical” as its antonym. This way, we describe the condition of an individual without any further stigmatization, and we cover the whole spectrum of possible illnesses without exposing the concrete diagnosis. If we are talking about, for example, autism or Asperger syndrome, we use the term “autistic spectrum”.

Another category is using mental illnesses diagnoses and various disorders colloquially. Using words with vulgar subtext such as “idiot” or “retarded” is commonplace. Equally, we colloquially use the expression “I am depressed” when we do not feel happy at the moment. Similarly, we label someone who is attached to tidiness as a person with OCD. Using these words colloquially seems to be harmless, but in reality these expressions diminish and oversimplify the experience of people with these illnesses. Moreover, they do not even describe the given experience precisely. Clinical depression is not the same as a bad mood; OCD is not about having a stronger sense of order. This is why it makes sense to avoid these expressions.

How Did It Begin?

The topic of disability and relationships is not discussed often and, if yes, then rather in the sense of sexual relationships. From our work with young people, the need to grasp and depict the topic in an accessible and sensitive way emerged, offering other perspectives that exemplify even the social dimension of relationships of people with disabilities such as mutual communication, communication of one’s needs, or negotiating power. At the same time, we did not want to focus solely on romantic relationships; we were also interested in relationships with friends, family, and oneself because these are formative for young people as well.

This guide has been developed based on one-on-one interviews with people living with disabilities. The interviews were conducted using the “storytelling” technique in which the respondents discussed their relationships according to their understanding and preferences. All respondents involved in this study participated on a voluntary basis. Based on the conducted interviews, we created stories presented in the activity section. The stories give an idea of respondents’ personal experiences and interpret them. Names of all respondents were anonymized in the stories.

On the theoretical background of the aspect concerning disabilities, we collaborated with Hana Morávková whose field is the culture of hearing impaired people. Illustrator Biceps created illustrations for the stories. The English translation was provided by Martin Švarc.

Preparing For Facilitation

Do I know how to ensure suitable conditions for creating a safe space in the given group of participants?

Acquainting yourself with the group of workshop participants beforehand is a prerequisite to creating a safe environment in which we work within sensitive topics. The dynamics of collective work and discussions tend to be strongly influenced by each participant’s traits and needs. For example, it is suitable to acquaint yourself in advance with the age of the participants, whether the group members know each other, whether someone has personal experience with some of the workshop topics or whether there are any special needs within the group. It is suitable to acquaint yourself beforehand with the dynamics of the whole group as well. Find out whether your group is lively, in which case there will be the need for more moderation, or, whether you should prepare for the chance of low interaction and look for possible ways to stimulate activity.

Have I familiarized myself with the suitable and sensitive vocabulary concerning the topic?

To be able to convey to the participants suitable sensitive vocabulary for discussing these topics, it is necessary that the facilitator has this vocabulary and is able to explain to the participants why sensitive language matters concerning a given topic.

Am I prepared to react constructively to the stereotypes linked with the topic?

It is reasonable to assume that some of the participants’ comments will be, to a certain extent, burdened with stereotypes and prejudices. It is important to be prepared for this and be able to constructively react. In the workshop environment, an utterance of stereotype should not become a subject of negative reactions; on the contrary, the workshop should be an opportunity for the realization of one’s stereotypical attitudes and for reflection on them.

Even the workshop facilitators can be burdened with stereotypical notions about the topic. It is important to reflect on these notions before the facilitation itself and to know one’s position on the topic. During the facilitation itself, we should try to maintain a neutral position and, ideally, do not bring our personal opinions into the discussion. If we happen to share our opinions, it is necessary to step out of the facilitator’s role for the given moment and frame our utterance(s) as a personal opinion, not as “the correct answer”.

Do I know how to lead the participants to reflection of their attitudes and opinions?

This guide should help participants with reflection on their opinions and attitudes to people with physical or mental form of disability. During the workshop, it is necessary to considerately encourage the participants in this reflection and, at the same time, explain why it is important even for people who do not meet people with disabilities in their social circle.

Am I able to talk about the topic openly?

Before the start of the workshop, it is necessary to consider whether the facilitator is ready to raise the topic with the group — whether they are not in discordance with it. This does not necessarily mean just prejudices against the topic or a reluctance to raise it. It could also be about, for example, personal experience or the closeness to the topic that might have been painful or otherwise oppressive. It is key to keep in mind that for carrying out the programme, the facilitator is as important as each participant, and the facilitator’s personal readiness is a part of the creation of a safe space.

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